Our Journey

We decided to create a blog so we could share with family and friends about "our journey". Our son Noah is 4 years old and he is the constant light in our world. He was born with a rare genetic disorder called Rubinstein Taybi Syndrome.. Life has not always been easy but Noah has taught us how to be courageous. We are so proud of his accomplishments the past four years. He is beautiful, funny, courageous and strong. We feel so blessed God has chosen us to raise Noah.. We also hope that new parents receiving an RTS diagnosis will find comfort in our words. Nicholas is the perfect addition to our family. God has once again blessed us with a amazing, beautiful little boy. We are so comforted knowing that Noah now has a little brother. Life is beautiful having these two angels in our world.

Saturday, October 10, 2009

A Different Perspective

I'm not really sure how to put this into words but I will try. I have heard a lot of people say that having a "typical" child after their special needs child helped heal old wounds. The interesting thing is, I don't know if I have experienced that same feeling. Of course after Nicholas was born I was glad he was healthy and thriving. I was relieved that he wasn't whisked away to the NICU while I lay feeling helpless and fearful. At times after Nicholas was first born I felt so much pain inside of me. I cried myself to sleep a few times remembering what Noah and I went through. I felt guilty that I was feeling this way right after he was born. I remember the first night Nicholas was home I went into Noah's room and bawled beside his crib. I had the hardest time accepting the "typical" birth and "typical" all together. It seems weird to write this out but it's the raw truth. "Typical" is still so bizarre to me at times. I don't want anyone to think I am wishing things were different because I'm not. I guess when you start out in Holland it's a shock when you get to Italy. Everything is faster when you are so used to a slower pace. I am so happy that Nicholas is reaching all of his milestones but at the same time I feel a twinge of pain. This is what I don't understand. I suppose it's a pain for Noah even though Noah could care less that it took him so much longer to do the same things. I hope that someday the wounds that still surface sometimes will go away. I don't know if that is realistic but I will hope anyway.

5 comments:

Kristi, I understand your feelings, pain and confusion. We are all so happy and blessed that Nick is healthy. It is difficult for you and the rest of us sometimes to see Mr. Noah trying so hard to meet his own challenges. We are all so proud of Noah's accomplishments but I know it is a struggle at times for both of you. Having Nick for a baby brother has been a joy for you, tommy and the best thing for Noah.

The dynamics can be so different - some of us have had kids with out issues first, then our tricky birth and then another that hearkens back to the first, feeling full circle. That may be what feels like healing. I had a relatively issue-free child first, though she had her moments as a baby. Those moments helped me when I had my complicated little darlin'. But I would am just guessing here, that if I had Addie first, then a child without issues, I might feel a little confusion, even guilt, about appreciating the "by the book" infancy the 2nd time around. I wonder if it would feel somewhat like betrayal, like I can't be totally happy about the absence of struggles as though it would impact my feelings for Addie.

I can't totally relate, but I think I can undertand how you might be feeling. Your small set of brothers there know that you love them both individually. They can see what they mean to you. And they have each other now.

Hey Kristi, Just like every kid is different (every RTS kid, too), all of us have different reactions to every circumstance. I just want to encourage you that what you're feeling is real and not "worse" than someone else might be feeling in their circumstances. We're all different people! Praise God for that...It would be boring if we were all the same.

Once again, thank you for sharing your raw feelings Kristi. I often find myself putting Nathan to bed with tears welling up out of my eyes. I sometimes cry during the day when the stings of reality hit. Like you, I hope that one day this will no longer be the case. What I am confident about is that as he grows and gains new skills, so will I.

Like Cindy said, we are all different and handle situations differently. We love both of our children unconditionally. Your feelings are o.k. Don't feel bad about the way you are feeling.

I love you Noah

I love you Nicholas

Nicholas

My Noah

Love is never quite as satisfying as when we give it away

Before you were conceived I wanted you.Before you were born I loved you.Before you were here an hour I would die for you.This is the miracle of life.

Maureen Hawkins

Look fear in the face, and it will cease to trouble you

When our spirits are lowAnd worry overcomes,Three guardian Angels remind usWe are never all alone.Sent from Heaven to guideAnd to help us find our wayTheir loving blessings bringprotection throughout everyday.

Our Family

Life is not measured by the number of breaths we take; but by the moments that take our breath away

About Me

My name is Kristi and I have been married to my husband Tom for 7 years. We have a wonderful amazing son Noah who is 3. We also have a new little boy named Nicholas. Both of our children have made my heart whole.